MS'sing About with MS

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Month: August 2016

As part of my volunteer work with the MS Society of Canada, I’m involved in a campaign to look for better housing solutions for people with MS who need a high level of care but are under the age of 65. Here’s why.

For a small proportion of people with MS, symptoms can come on really fast, and when you’re still young. When that happens, you’re in a wheelchair full time. You probably have limited movement in your limbs. Maybe swallowing, speech, eyesight issues. You’ve lost your independence.

If you’re lucky, like me, and you have someone at home that can care for you, like me, you stay in your own home, like me. There is a program in BC called CSIL – Choice in Supports for Independent Living – where you get control of the funding for your care, and you employ carers to come into your home. I do that too, as it gives Ian and I a break from each other! (Or as ‘they’ put it, respite for the carer from me!). But that only funds you for up to 4 hours a day. What if you need more care than that and there’s no-one at home who is capable of doing that?

The answer is, you move to a care home. A residential facility. A senior’s home. All names for the same thing. But what if you’re in your 30s or 40s? Yep, that’s the only option for you. And, once you enter one of the facilities, that’s it. You live the rest of your life there.

In BC 60% of the people in residential facilities are aged over 85, and 15% are aged under 65.

So the life of one of these homes is built around the elderly. The social life, the music, the pictures on the walls, the expectations of the staff. But you’re still young inside! You don’t want “old time music” and bingo – you want movies, and the Internet, and to live with people your own age.

This campaign is trying to do everything it can to bring this situation to the attention of those who have the power to make a difference. The politicians. Our MLAs. And for them to want to make a difference, they have to know these people, the ones who live this life.

In July I met with Steve Thomson and Norm Letnick, two of our local MLAs. They were interested in the topic and the statistics, and really got stuck into thinking about what the lives of these people are like. I explained to them that in many ways, without Ian, I’m close to being in one of those facilities – at which point they looked at me in horror and joked about the poor staff who would have to look after me! (It doesn’t sound funny, but it was. You had to be there…)

The key point of the meeting was for me to ask them to meet people in our community who are in that situation – young people who are living the life of an 85 year old in a care home. They both said yes, to their credit – “they’re our constituents! Of course we will see them!”

The next stage was to find someone in this situation and ask them if they’re willing to meet with the MLAs – because it appears that not everyone is keen to talk to politicians – go figure. At this point Sherry (our programs and services coordinator) stepped in, and found two women in the same facility that would be prepared to talk to us about this. And that’s where we got to, today.

I went to visit this care home firmly thinking about the campaign, the MLAs, the possibilities for change. When I got there, I realised this was all about me, partially.

We entered the facility and it was lovely. None of that clinical smell. The hallways, the decorations. Birds in a cage. A hairdressers called Scissorhands. The first sign that this was a senior’s home was this beautiful mural of old photographs of Kelowna – not because we were in a museum, but because this was age appropriate for the people who lived there.

We turned a corner, and there was an open area, again beautifully laid out, leather sofas but no-one sat in them – because everyone was in wheelchairs, and very, very old. I could feel this tight grip around my throat, because I suddenly realised that this is where people my age and younger, who are not much ‘worse’ than me, live. It all became very, very real.

We got to the room of the young woman we were meeting. I’m going to keep this vague, for obvious reasons – her privacy. She’s in her early 40s. Had MS for a few years more than me, and been living in these homes for the last 5 or 6 years, so really needs a high level of care. We talked about what she would want to tell these MLAs. The first thing – the loneliness. She spends most of the day alone, in her room. She hasn’t left the facility since she arrived, 18 months ago. There’s no-one her age, nothing to do for her interests. People see her disabilities first, but forget that behind those is a young, vibrant woman, who not that many years ago lived a full, very active, outdoors life. She’s still there. She’s not ready to be 85.

We also asked her about a few things on her wish list. I’m not going to say what they are yet, just that Sherry and I are going to do the best we possibly can to make them happen. We have a mission and nothing is going to stop us!

I came away choked up with anger. Why is it like this? Why has no-one stopped this from happening?

The next step is September 19th, when the MLAs come with us to meet this amazing woman. From there, the ball is in their hands to some extent, but I will be that squeaky wheel. There must be change for people like this young woman, and the 4500 people like her in BC. There are many creative solutions that could be tried. The three of us brainstormed just a few in our conversation – if we can do it, so can anyone else. There has to be that will to change.

I have told people so many times how lucky I am, and they don’t really get it. I have great benefits, great LTD, I live at home with a husband who didn’t run for the hills when I got sick – and 50% of them do! I love my live, my dogs, everything we do together – and not to mention this summer and Winnie. Sure, my MS is not an easy thing to live with, but I have learnt that I am very fortunate, and there are too many whose lives have been made a living hell with MS. People ask me why I spend my time doing advocacy – and that’s why. It’s not because I want better HandyDart for myself, or better ‘age appropriate’ housing (to use the jargon) for myself, or whatever it is that I expect the City of Kelowna to wake up and do. It’s because I cannot live with myself having met these people and knowing that with a few emails and a little bit of my time, I could possibly make their lives a little more bearable. I would challenge any of you to meet these people and see if you could walk away and do nothing.
The photo is of the wall in her room – of paintings that she did herself a few years ago when she still had movement in her arms and hands. I asked if I could take a photo and share it on my blog, and she said yes.

A quick recap. The City of Kelowna started designing a new action plan for something called Community for All Ages, and they said that it would benefit “seniors, children and people with diverse abilities”. There was little to no theoretical framework behind it and there are no disabled people directly involved in the decision making.
I met with the mayor to bring up this and the lack of action on accessibility matters generally in Kelowna, a city that has ‘being inclusive’ as one of its priorities. He listened and said he would get back to me.

Well, he did get back to me – and it was distinctly underwhelming! The last section of his email said “If you have specific accessibility challenges in Kelowna that require maintenance (i.e. sidewalk crack, intersection crossing, etc), please use our online service request system and your request will reach the right department.”

I have tried the service request system before, and always been unsuccessful, but rather than just write back with this, I decided to try the system out one more time.

Recently, we parked in an accessible parking stall on a street that had no way to access the sidewalk. The City is responsible for this parking spot and collects the parking fees for it. Here’s a video. I know you have to look at it sideways – we’re working on it!

As you can see, and hear from Ian’s description, I had to drive down the road and access the sidewalk at the nearest junction, which is obviously not safe.

I completed the online request. There was an option to request contact by email, which I chose, as I wanted to pass on the link to the video. I didn’t get an email. Instead, I checked the status of my request a few days later and this is what I saw:

“I do not determine where wheelchair ramps go.” Well, thanks whoever you are. Great way to demonstrate concern for the needs of disabled people in the City of Kelowna.

Of course, in a City that was genuinely inclusive and that recognised the City’s role in removing barriers for disabled people, the person who received my request would pass it on to the person who does indeed “determine where wheelchair ramps go.”

However, in a City that chooses to ignore the needs of disabled people, to have no mechanism for disabled people to report accessibility issues, then that City will never be inclusive, as Kelowna claims to want to be.

An inclusive City creates systems that remove barriers for disabled people, or, even better, makes sure that they are never there in the first place. It would train its staff to make sure that the City took responsibility for solving any issues that crop up, rather than placing the problem back on to the individual. That’s a City I would like to live in, but not one I live in at the moment.

Of course, I’m not leaving it here. I’ve been back in touch with both the coordinator of Community for All Ages and the Mayor. I’ll be back with the next instalment once I hear from them!